CSN Login
Members Online: 1

You are here

I am torn between flaunting and sharing my success

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear friends,

I have started round two of the second dendritic cell vaccine with high hopes.

this afternoon I had another chemo embolisation split 50 50 lungs and liver with irenotecan and mytomycin and avastin ( off label use , as direct inject not tested offically)

the good news is dr vogel said the mri and ct are excellent. he described my response to the treatment as like 1 in 40.

thats bitter sweet, in that my therapy response for however long it continues is more tired up with me, than the german therapies themselves.

possibly I am guilty of the assumption that whats worked for me, would work for others. if my over exuberant posts and replies have upset anyone I m sorry.

I have the best intentions, the dilema I face is do I share my experience so that maybe 1 in 100 here might come and try the therapies and in the process effectively taunt the other 99. I am also aware that many newbies here may not appreciate the effort I have put into my result. 

I am so tired, just got off the operating table and drove to airport with a number leg in the snow. the german therapies are challenging in many respects and

I know they are out of reach the most existing conventional based colorectal patients.

the doctors here are also nervous, I was booked in for another chemo embolisation in a month.

Ì do firmly believe my success is repeatable ( I am human, my biology similar to yours ), but that to have a chance at success you require similar financial resources and commitment and focus I have developed.

hugs,

Pete

 

wolfen's picture
wolfen
Posts: 1330
Joined: Apr 2009

There is nothing wrong with you being exuberant about your successful treatment. While it's true that for most of us that the financial obligations are not within our reach, there are new members joining all the time. Who's to say that your treatments may not help someone else. I applaud you for your research and cutting edge treatments and wish only the best for you.

Remember to get some rest in there somewhere.

Luv,

Wolfen

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I'm glad you are doing so well, but since everything you've done includes chemo your other stuff is just stuff you do, but no idea if it works or not.

Pete, why are you going through so much chemo again if your scans are clear and your CEA is 3.2?

Concernedly,

Winter Marie

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

although it might be more diplomatic to not suggest treatment that costs 120 k to someone who has mentioned that they are on Medicaid!  Otherwise, I would say keep up what you're doing.  Even if none of us ever try your approach (although I just read that someone was thinking about trying it, can't remember who it was...typical), it's still interesting to read about it.  And personally, I'm just happy to see someone doing well in the cancer fight, whatever means they might use to get there.  You aren't out there trying to convince newbies not to do chemo, as far as I've seen, so it's all good.  Hugs~AA

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

We alll need to hear the positive news, so keep it coming Pete!

Best Always, mike

 

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

Pete,

No apologies necessary here. In my book you are a pioneer, you're going out on a limb and trying something few have tried. Continued success and keep up the good work. Please continue to let us know how you are progressing...

Buster

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Wish I didn't...but I do. 

And that's the damnation of it all for me.

-Craig

John23's picture
John23
Posts: 2140
Joined: Jan 2007

 

The medicinal strength imported herbs I used cost around $5 per pound, with a pound providing a month and a half of broth treatments. I used 7 different herbs, so the cost for a month and a half of treatment was still –well- under $100.

 

Stage four colon cancer in 2006…. 6 months of herbs, with a 6 month break between….two years worth? And I’m still typing Pete! No side effects, and I haven’t taken any of the herbs in the past three years!

 

I guess if one has $120k to burn, it’s worth it to try “German holistic medicine” instead of inexpensive TCM?

 

(Personally, I think I liked my path better…..)

 

 

Best wishes for you, man! I do hope it works well.

 

John

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

Your sucesss is Great News! and I too would be shouting it from the rooftops.

However I too am one of those people that says.. Why not me... but still happy to hear about successes and know "All in good time"..

Keep it going Pete..

All the best. Donna

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010



Normal
0




false
false
false

EN-US
X-NONE
X-NONE













MicrosoftInternetExplorer4














DefSemiHidden="true" DefQFormat="false" DefPriority="99"
LatentStyleCount="267">
UnhideWhenUsed="false" QFormat="true" Name="Normal"/>
UnhideWhenUsed="false" QFormat="true" Name="heading 1"/>


















UnhideWhenUsed="false" QFormat="true" Name="Title"/>

UnhideWhenUsed="false" QFormat="true" Name="Subtitle"/>
UnhideWhenUsed="false" QFormat="true" Name="Strong"/>
UnhideWhenUsed="false" QFormat="true" Name="Emphasis"/>
UnhideWhenUsed="false" Name="Table Grid"/>

UnhideWhenUsed="false" QFormat="true" Name="No Spacing"/>
UnhideWhenUsed="false" Name="Light Shading"/>
UnhideWhenUsed="false" Name="Light List"/>
UnhideWhenUsed="false" Name="Light Grid"/>
UnhideWhenUsed="false" Name="Medium Shading 1"/>
UnhideWhenUsed="false" Name="Medium Shading 2"/>
UnhideWhenUsed="false" Name="Medium List 1"/>
UnhideWhenUsed="false" Name="Medium List 2"/>
UnhideWhenUsed="false" Name="Medium Grid 1"/>
UnhideWhenUsed="false" Name="Medium Grid 2"/>
UnhideWhenUsed="false" Name="Medium Grid 3"/>
UnhideWhenUsed="false" Name="Dark List"/>
UnhideWhenUsed="false" Name="Colorful Shading"/>
UnhideWhenUsed="false" Name="Colorful List"/>
UnhideWhenUsed="false" Name="Colorful Grid"/>
UnhideWhenUsed="false" Name="Light Shading Accent 1"/>
UnhideWhenUsed="false" Name="Light List Accent 1"/>
UnhideWhenUsed="false" Name="Light Grid Accent 1"/>
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 1"/>
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 1"/>
UnhideWhenUsed="false" Name="Medium List 1 Accent 1"/>

UnhideWhenUsed="false" QFormat="true" Name="List Paragraph"/>
UnhideWhenUsed="false" QFormat="true" Name="Quote"/>
UnhideWhenUsed="false" QFormat="true" Name="Intense Quote"/>
UnhideWhenUsed="false" Name="Medium List 2 Accent 1"/>
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 1"/>
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 1"/>
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 1"/>
UnhideWhenUsed="false" Name="Dark List Accent 1"/>
UnhideWhenUsed="false" Name="Colorful Shading Accent 1"/>
UnhideWhenUsed="false" Name="Colorful List Accent 1"/>
UnhideWhenUsed="false" Name="Colorful Grid Accent 1"/>
UnhideWhenUsed="false" Name="Light Shading Accent 2"/>
UnhideWhenUsed="false" Name="Light List Accent 2"/>
UnhideWhenUsed="false" Name="Light Grid Accent 2"/>
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 2"/>
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 2"/>
UnhideWhenUsed="false" Name="Medium List 1 Accent 2"/>
UnhideWhenUsed="false" Name="Medium List 2 Accent 2"/>
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 2"/>
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 2"/>
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 2"/>
UnhideWhenUsed="false" Name="Dark List Accent 2"/>
UnhideWhenUsed="false" Name="Colorful Shading Accent 2"/>
UnhideWhenUsed="false" Name="Colorful List Accent 2"/>
UnhideWhenUsed="false" Name="Colorful Grid Accent 2"/>
UnhideWhenUsed="false" Name="Light Shading Accent 3"/>
UnhideWhenUsed="false" Name="Light List Accent 3"/>
UnhideWhenUsed="false" Name="Light Grid Accent 3"/>
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 3"/>
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 3"/>
UnhideWhenUsed="false" Name="Medium List 1 Accent 3"/>
UnhideWhenUsed="false" Name="Medium List 2 Accent 3"/>
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 3"/>
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 3"/>
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 3"/>
UnhideWhenUsed="false" Name="Dark List Accent 3"/>
UnhideWhenUsed="false" Name="Colorful Shading Accent 3"/>
UnhideWhenUsed="false" Name="Colorful List Accent 3"/>
UnhideWhenUsed="false" Name="Colorful Grid Accent 3"/>
UnhideWhenUsed="false" Name="Light Shading Accent 4"/>
UnhideWhenUsed="false" Name="Light List Accent 4"/>
UnhideWhenUsed="false" Name="Light Grid Accent 4"/>
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 4"/>
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 4"/>
UnhideWhenUsed="false" Name="Medium List 1 Accent 4"/>
UnhideWhenUsed="false" Name="Medium List 2 Accent 4"/>
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 4"/>
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 4"/>
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 4"/>
UnhideWhenUsed="false" Name="Dark List Accent 4"/>
UnhideWhenUsed="false" Name="Colorful Shading Accent 4"/>
UnhideWhenUsed="false" Name="Colorful List Accent 4"/>
UnhideWhenUsed="false" Name="Colorful Grid Accent 4"/>
UnhideWhenUsed="false" Name="Light Shading Accent 5"/>
UnhideWhenUsed="false" Name="Light List Accent 5"/>
UnhideWhenUsed="false" Name="Light Grid Accent 5"/>
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 5"/>
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 5"/>
UnhideWhenUsed="false" Name="Medium List 1 Accent 5"/>
UnhideWhenUsed="false" Name="Medium List 2 Accent 5"/>
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 5"/>
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 5"/>
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 5"/>
UnhideWhenUsed="false" Name="Dark List Accent 5"/>
UnhideWhenUsed="false" Name="Colorful Shading Accent 5"/>
UnhideWhenUsed="false" Name="Colorful List Accent 5"/>
UnhideWhenUsed="false" Name="Colorful Grid Accent 5"/>
UnhideWhenUsed="false" Name="Light Shading Accent 6"/>
UnhideWhenUsed="false" Name="Light List Accent 6"/>
UnhideWhenUsed="false" Name="Light Grid Accent 6"/>
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 6"/>
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 6"/>
UnhideWhenUsed="false" Name="Medium List 1 Accent 6"/>
UnhideWhenUsed="false" Name="Medium List 2 Accent 6"/>
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 6"/>
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 6"/>
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 6"/>
UnhideWhenUsed="false" Name="Dark List Accent 6"/>
UnhideWhenUsed="false" Name="Colorful Shading Accent 6"/>
UnhideWhenUsed="false" Name="Colorful List Accent 6"/>
UnhideWhenUsed="false" Name="Colorful Grid Accent 6"/>
UnhideWhenUsed="false" QFormat="true" Name="Subtle Emphasis"/>
UnhideWhenUsed="false" QFormat="true" Name="Intense Emphasis"/>
UnhideWhenUsed="false" QFormat="true" Name="Subtle Reference"/>
UnhideWhenUsed="false" QFormat="true" Name="Intense Reference"/>
UnhideWhenUsed="false" QFormat="true" Name="Book Title"/>



/* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin-top:0in; mso-para-margin-right:0in; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0in; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"Times New Roman"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin;}

Dear Pete,

I too applaud your determination to find a cure for yourself, and it's wonderful that your CEA has dropped, but as some others have mentioned, you simply need to show a little more decorum in regard to your wealth.  My guess is that 99% of cancer patients don't have a spare $120k to spend on a few weeks of trial therapies in Germany, therefore you are truly fortunate to be in that 1% category.  I wish you many more years of being NED and for a very happy and healthy future for you and your family.

All my best,

Cynthia

tanstaafl's picture
tanstaafl
Posts: 1303
Joined: Oct 2010

One possible source of funds is a viatical settlement on life insurance.  Pete's process sounded almost too easy, figure it will probably be more difficult and expensive in the US. 

janie1
Posts: 753
Joined: Apr 2011

Pete, keep getting the word out there, drawing attention to curing cancer.
Dr. Chang in NYC is trying. I asked someone why don't more doctors do what he is doing. They explained the many obstacles for doctors wanting to do more.
It is a dirty, rotten, shame.
The pace of advancement is numbing. Some of the chemo drugs are over 40 years old.
I like that you get the media involved. Keep it up, but take care of yourself.

tachilders's picture
tachilders
Posts: 313
Joined: Jun 2012

It was me who said that I might try and go to Germany like Pete, but only if I can get an advanced pay-ouy on my life insurance, as tans mentions.  My criteria for that is <12 months to live diagnosis, and not sure if I can get my oncs to officially state that (haven't asked yet).  It would be a HUGE financial and personal sacrifice to go to Germany for 3 months or so for initial treatment, especially for a 1 in 40 chance of success.  My odds would need to be closer to 1 in 3 or 1 in 4 to spend the time and money, so we will see what Hallwang says after reviewing my medical records.  As I have stated before, one anecdotal case does not provide enough info to make any kind of statement about what works, especially for other people with vastly different disease states.  Stage 4 describes a HUGE range of metatastic conditions, and the progonosis may not even be close to the same for 2 different stage 4 patients.  MY particular prognosis was not good at all, but I am here 8 months later, taking standard chemo, having almost zero side effects, working full-time, and feeling normal 99% of the time.  My blood counts have been pretty much normal all the way through chemo.  However, most people do not do as well with chemo as I have, so I would never tell someone else to expect my results.  In my opinion, the most important things that determine our final prognosis are the genetics of our particular cancers (does it respond well to chemo/avastin/erbitux), our health going into treatment, and the extent of spread of the disease (is surgery an option).  These factors likely have more to do with who does well and who does not than TCM or German experimental therapies, but that is my opinion, and I can't discount John or Pete's successes with their treatment plans.  I am only considering going to Germany because quite frankly, my long-term outlook is not good just relying on chemo (surgery not an option for me), but I think the dendritic cell vaccine might help me.

Tedd 

John23's picture
John23
Posts: 2140
Joined: Jan 2007

 

Re:

“These factors likely have more to do with who does well and who does not than TCM or German experimental therapies, but that is my opinion, and I can't discount John or Pete's successes with their treatment plans.  I am only considering going to Germany because quite frankly, my long-term outlook is not good just relying on chemo (surgery not an option for me), but I think the dendritic cell vaccine might help me.”

 

Just to quickly note: Traditional Chinese Medicine (TCM) is not an “experimental therapy”, it’s been practiced for nearly four thousand years with billions upon billions of humans, and continues to be used to this day in many of the finest Asian hospitals.

 

The TCM practitioner we use has treated “late term” cancer victims that western medicine had given up with; the victims oncologists had referred them to our TCM doc. As far as I know, each one remains alive today, years after being told there was little if any time left for them. But no TCM practitioner will ever claim to be able to “cure cancer”, in spite of the success rate!

 

The herbs I had used (I haven’t taken any in years now, although I should as a precaution), cost an amount that can be afforded by nearly anyone. I strongly suggest having a qualified TCM practitioner or herbalist on hand, to insure no problems arise that can’t be quickly resolved, if one attempts “self medicating”; the herbs are  all medicinal strength and not the types one would find “on the shelf”. It’s not simple over-the-counter turmeric or cinnamon……..

 

My “blog” here at CSN explains more. There are many options and alternative to be used, but none should be costing anyone their life savings. If it is or does, it should be a cause to be suspicious and wary.

 

Best wishes for better health,

 

John

jen2012
Posts: 1607
Joined: Aug 2012

Yes, my husband is doing the chemo/surgery route right now, but I have read through John's blog and am keeping it in my back pocket.   I think it's worth a try, maybe even during a chemo break?  I'm not quite sure how it all works with chemo and I'm sure that forwarding the info to the oncologist won't help.   John - how do you go about finding a good TCM doc?

I truly hope that Pete is here telling his story many many years from now, but I do think it's too early to say cure....or even what caused that cure.  

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
“John - how do you go about finding a good TCM doc?”

It’s as difficult to locate a good surgeon, GP, or oncologist, as it is locating a decent TCM doc. There isn’t a license in the world that will prove any professional is the best that you can find; a license really doesn’t matter!

You will have to study a bit, and do your best to understand what Traditional Chinese Medicine is all about, and try to understand what